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“Genetics”

This is the only “subject” blog entry I had written for class. If you want me to address a different subject (end of life care, etc.) put it in the comments and I will try to address it over the next couple of months.

Here is the first and second installments introducing the subject of bioethics.

Genetics is a funny word. It means a lot of different things to different people and depending on the way it’s used. To some, genetics mean the collection of genes and alleles contained within a person’s genome. To scientists, genetics is the study of genes and gene interactions. Others, when they speak of genetics, actually mean genetic enhancement or gene therapy. As a scientist, I will stick to the scientific uses of genetics: the field of research involving genes and their products and as shorthand for the system of genes and regulators present in (almost) every cell that makes up the human body. Genetic medicine will do to cover gene therapy, genetic enhancement and genetic analysis.

Genetics, genetic enhancement, and gene analysis have been received with mixed aplomb. Two clear camps have emerged. On one side are those who support all or most forms of genetics, gene therapy and various degrees of genetic enhancement. This group believes, at its most modest stance, that gene therapy can overcome genetic diseases and, in the extreme, help humanity fulfill its full potential, whatever that may be, through genetic enhancement. The opposing camp agrees that genetics research and most gene therapies can be used beneficially, but genetic analysis and genetic enhancement demean our humanness.

This brings up the very good question: What is human? We started in the previous section with the position that understanding the relationship between the soul and the body is essential to answering this question. The simple Christian “top down” answer is that humans are embodied persons in a relationship with God. The simple scientific answer is that being human is having one of the gene combinations particular to Homo sapiens. Given the preceding discussion of the complexities of the relationship of the human soul with the body, it seems clear that a discussion of what it is to be human will be equally complex.

Human dignity is often invoked in these conversations about genetic medicine and it seems to stand as a proxy for certain visions of “being human.” If the technology seems to go against human dignity, then it must go against being human. There is some merit to this. A case can be made for dignity as “being human,” of flourishing as humans. We are somewhere between animals and angels, according to Gilbert Meilaender, and this gives humans the unique position of having dignity. Human dignity, according to Meilaender, is the display of the distinguishing qualities of humanity. These qualities may be freedom of choice, intellectual or athletic accomplishment, or spiritual piety, to name a few.

Meilaender also defines what he calls personal dignity, which is the fact that “every person is equidistant from Eternity.” That is, every person is due equal respect because of their intrinsic humanness and this humanness comes from everyone’s equal relation to God. This can be seen in our common mortality and common “individual neediness.”

A word of warning. Human dignity relies on some level of accomplishment of a defining human characteristic and is therefore too easily substituted for “value.” This has the danger of causing us to value those who display more dignity over those who cannot fully display dignity such as the severely mentally retarded. Personal dignity, according to Meilaender must have a transformative effect on human dignity. This means that though a person might be incapable of fully expressing human dignity, their personal dignity refuses to allow us to see them as anything but human, equally distant from eternity as ourselves.

This is all well and good, but dignity seems to not precisely define humanness. But that’s the point. Humanness is the quality of having dignity, the expression of universally human characteristics. Dignity situates us uniquely as a little above animals, but a little below angels. Everything else about being human must fall within dignity.

Where do genetics and genetic medicine fall? It would be too easy to discount genetics and genetic medicine as being outside human dignity as they mostly involve altering the “natural” human state and therefore human dignity. However, given our complex relationship with our bodies and how that reflects our relationship with God, the answer should honor that complexity.
The demands of stewardship, that we use the appropriate means at our disposal – including gene therapy – to keep our bodies healthy, seems to be at odds with not changing our nature. Recalling the example of metabolism, I showed how, though the body may change its molecular composition, the essential person remains the same. It is too basic to define an entire human and is limited to defining physical phenotype. Therefore, being human is not defined by the body, but by being embodied.

Does genetic medicine change what it means to be embodied? I would argue no. Even genes and gene products synthesized and expressed de novo in the human for the purpose of genetic enhancement must obey the biological rules governing gene expression and protein activity. Our bodies will never overcome the physical boundaries imposed by our biology. Therefore, genetic medicine cannot make us more than human, or transhuman, and is no threat to our personal dignity on its own.

What do threaten to undermine our collective dignity are issues of social justice. Disparities in the distribution of the fruits of genetics research and availability of therapies threaten to place humans differentially closer or further from Eternity. Those with the means and access to gene therapies or enhancements could place themselves in a better position to fully display human dignity which in turn could have a negative transformative effect on personal dignity. Personal dignity might suffer the “Animal Farm” effect, that is, all are equal, but some are more equal than others. With this in mind, it is clear that in order for genetics and genetic medicine to be consistent with human and personal dignity, it must first address issues of social justice and fair distribution of benefits.

Although social justice presents a clear stumbling block to the dignified use of genetic information and genetic medicine, we must press forward with research. It is only through continued research that better and cheaper ways to give genetics-based therapies will be discovered. If we allow fear of new technologies to dictate our path, then we will have rejected dignity, human dignity in the form of scientific achievement, and personal dignity in rejection of those we are too afraid to help with genetic medicine. At the same time we must not allow our technologies to define what is human.

Genetics and genetic medicine can give a great many people hope that their genetic conditions might be overcome. We must remember that the people who are treated using genetic medicine are embodied persons with dignity. As physicians and scientists we must discover and create treatments that comport with the personhood and dignity of the patient.